2017 Conference Speakers

These are some of the confirmed speakers for the Society for Participatory Medicine’s first-ever conference, to be held on October 25, 2017. Learn more and register today for this exciting event!

Keynote Speakers

Shannon Brownlee, MSc

Shannon BrownleeShannon Brownlee, MSc, is senior vice president of the Lown Institute and a visiting scientist at the Harvard T.H. Chan School of Public Health.

She and Lown Institute president, Dr. Vikas Saini, co-founded the Right Care Alliance, a network of activist patients, clinicians, and community leaders. Before joining the Lown Institute, in 2013, Brownlee was acting director of the Health Policy Program at the New America Foundation, a think tank based in Washington, DC. While at New America, she published the ground-breaking book, Overtreated: Why Too Much Medicine is Making Us Sicker and Poorer, which was named the best economics book of 2007 by the New York Times.

Read more about Shannon now.

 

Tom Delbanco, MD

Tom DelbancoTom Delbanco is the Richard and Florence Koplow – James Tullis Professor of General Medicine and Primary Care at Harvard Medical School. Until 2002, he was Chief of the Division of General Medicine and Primary Care at Beth Israel Deaconess Medical Center in Boston, a unit he created and led for more than 30 years. He is the Co-Founder of Open Notes. Open Notes an international, nonprofit movement advocating for a culture change in the way visit notes are managed. He believes that providing ready access to notes can empower patients, families, and caregivers to feel more in control of their health care decisions, and improve the quality and safety of care. Open Notes believes that an informed, and engaged patient is a healthier patient.

 

Rushika Fernandopulle, MD, MPP

Rushika FernandopulleRushika Fernandopulle MD is a practicing physician and co-founder and CEO of Iora Health, a health care services firm based in Cambridge, MA, whose mission is to build a radically new model of primary care to improve quality and service and reduce overall expenditures. He was the first Executive Director of the Harvard Interfaculty Program for Health Systems Improvement, and Managing Director of the Clinical Initiatives Center at the Advisory Board Company. His authored publications, include Health Care Policy, a textbook for physicians and medical students, and Uninsured in America: Life and Death in the Land of Opportunity. He serves on the staff at Massachusetts General Hospital and on the faculty of Harvard Medical School. Rushika believes that the people closest to the care come up with all the good ideas. We just need to allow it to happen.

Read more about Rushika now.

 

Harlan Krumholz, MD

Harlan KrumholzIn an article by Matthew Herper, featured in Forbes in 2010, he described Yale Cardiologist Harlan Krumholz MD, as “The Most Powerful Doctor You Never Heard Of”. “Every day millions of patients are being treated, and the lessons from their experiences are lost because there is no systematic effort to learn from them,” said Dr. Krumholz. “If I’m sitting down with a patient, I should be able to take advantage of everything we have learned up until yesterday to treat them.” Harlan Krumholz basic idea is that if you ask the right question and pick the right measurement, you can figure out a way to get the right answer. He has a knack for focusing on performance metrics that hold hospitals and healthcare orgs accountable. Harlan Krumholz is a risk taker. A quality disrupter. We are fortunate to have him as a keynote speaker at #SPM2017.

Read more about Harlan now.

 

Liz Salmi

Liz SalmiSelf-professed Healthcare Communications Nerd, Brain Cancer Survivor, Senior Communications Multimedia Manager at Open Notes, and punk rock drummer, Liz Salmi is a patient, an Informaticist, an advocate and a member of the Board of Directors at The National Brain Tumor Society. Her blog, The Liz Army, explores patient empowerment, brain cancer awareness, friendship, healthcare, hospice and grief, through podcasts, interviews and blog posts.

A “curious person-turned citizen scientist”, Liz turned her brain cancer diagnosis into an open source chronicle of the patient experience.

Read more about Liz and The Liz Army now.

 

Dr. Lori Wilson

Lori Wilson“A Breast Cancer Patient Who Also Wears a White Coat” Dr. Lori Wilson, a cancer surgeon at Howard University Hospital and Cancer Center in Washington, DC, will join our all-star lineup of speakers at #SPM2017. She shares her unique cancer experience as a survivor and health care provider. Her message is one of advocacy, sharing her experience of health disparities and the need for patients to participate in research as an investment in the future. Dr. Lori Wilson inspires and motivates us on health equity.

Read more about Dr. Lori Wilson now.

 

Panelists

Danny Van Leeuwen

Danny van Leeuwen, RN, MPH, CPHQ, is known in the advocacy community as ‘Health-Hats’. He is a person with Multiple Sclerosis, has been primary care partner for his grandmother, mother, and son during their end-of-life journeys and his wife and grandson during severe illnesses. He is also a nurse, informaticist and a leader. As a Patient Stakeholder, Danny is a lifetime member of the Society of Participatory Medicine, has reviewed funding applications for PCORI, co-chairs PCORI’s Communication and Dissemination of Research Advisory Panel, has served on technical expert panels for AHRQ and MassHealth. Danny blogs weekly about the experience of people at the center of care and is an independent consult working with Wellesley Partners. LLC.

Sarah Krüg

Sarah Krüg is CEO of CANCER101, a patient advocacy organization whose mission is to help patients and caregivers navigate the cancer journey and partner with their healthcare team to make informed decisions. Sarah is also the founder of Health Collaboratory, a global innovations hub that paves the path for co-design and collaboration in healthcare and is focused on amplifying the voice of the patient and caregiver in the design, development and continuous improvement of innovations created to serve them. She is the also the Acting Executive Director of the Society for Participatory Medicine, a patient: clinician member driven organization whose mission is to enable collaborative partnerships across the continuum of healthcare. Sarah serves on the board of the National Organization of Rare Diseases and is Research Chair of the Cancer Education Network.
She previously held the position of Global Education Director in the Medical Education Group at Pfizer, as well as patient advocacy relations. She also established the Global Investigator Initiated Research Program at Pfizer. Prior to joining Pfizer, Sarah spearheaded the development of the Pediatric Disease Management clinical pathways and conducted clinical research at Memorial Sloan- Kettering Cancer Center.

Kyra Bobinet

Dr. Kyra Bobinet has five words of advice on engaging people in health:
be caring, authentic, and useful. As a national speaker, bestselling author and CEO-founder of
engagedIN, a neuroscience behavior design firm, Kyra devotes her life to cracking the code of WHY we engage in our health. Everyday, she and her team use neuroscience to make products and communications more engaging.
For this work, Kyra received the 2015 Innovator Award from Harvard where she received her Masters in Public Health. She earned her medical degree at UCSF School of Medicine. Dr. Bobinet is the author of Well Designed Life: 10 Lessons in Brain Science and Design Thinking for a Mindful, Healthy, and Purposeful Life. She has been featured by the Wall Street Journal, New York Times, Huffington Post, ExperienceLife and NPR. She has created health start-ups, blockbuster products, health apps, big data algorithms, and evidence- based programs in mind-body & metabolic medicine.

A former executive at a large payer, she has designed large-scale population health management and wellness interventions that yielded ROI for Fortune 500 companies. Dr. Bobinet, co-teaches patient engagement and health design with Dr. Larry Chu at Stanford School of Medicine, and studied in BJ Fogg’s behavior design lab. When she’s not geeking out on neuroscience, you can find her engaged in her 160-acre training center in the Santa Cruz Mountains.

Erica Spatz

Dr. Erica Spatz, MD, MHS is a general cardiologist and clinical investigator at the Center for Outcomes Research and Evaluation at Yale University School of Medicine. Her clinical and research interests include the development of individualized approaches to disease management, along with tools to help patients become more active in their healthcare decisions.

Geri Lynn Baumblatt

Geri Lynn Baumblatt, M.A. is Executive Director of Patient Engagement at Emmi/Wolters Kluwer. She’s worked with designers, animators, decision and behavioral scientists, patients, and clinicians to create interactive multimedia programs and phone calls thatreduce anxiety, improve outcomes, and help patients participate in decisions and their care. She collaborates on patient and clinician engagement research, is on the board of the Journal of Patient Experience, blogs for the Association for Patient Experience, hosts anannual October Health Literacy blog series (going on now!), and participates in panels and events for organizations like AHRQ, the Brookings Institute, the Society for Medical Decision Making, Stanford MedicineX, and the Beryl Institute.

Keren Ladin

Keren Ladin, PhD, MSc is an assistant professor of occupational therapy and community health at Tufts University and Director of Research on Ethics, Aging, and Community Health (REACH Lab). Her research interests include improving patient-centered care by understanding the role of social support and social networks in medical decision-making, especially in the areas of aging, kidney disease, and transplantation.

Sue Berg

Sue Berg, MS is the Program Director for the Center for Shared Decision Making at Dartmouth-Hitchcock in New Hampshire. In this role she implements the use of shared decision making tools and processes, oversees a service learning program that trains student and community volunteers to support patients, manages Honoring Care Decisions the D-H wide program to promote advance care planning and provides decision support counseling to patients. Previously Sue practiced as a genetic counselor for over 20 years in the areas of pediatrics, adult onset genetic disorders, and prenatal diagnosis.

Sue earned her BS in biology at the University of New Hampshire and her MS in Medical Genetics at the University of Wisconsin-Madison. She is licensed as a Genetic Counselor in New Hampshire.

Barbra Rabson

Barbra Rabson is the President and CEO of the Massachusetts Health Quality Partners (MHQP), a nationally recognized coalition of health care providers, insurers, patients, academics and purchasers working together to promote measureable improvement in the quality of health care services in Massachusetts. Under Ms. Rabson’s leadership since 1998, MHQP has become one of the most trusted names in performance measurement and public reporting of health care information in Massachusetts and in the nation. She has led MHQP to issue three first in the nation statewide public releases of hospital and physician performance information, including the first in the nation collaboration with Consumer Reports to jointly release performance results on MA primary care physicians on a statewide patient experience survey. Ms. Rabson is a founding member and past Board Chair of the Network for Regional Healthcare Improvement (NRHI), a national network of regional health improvement collaboratives. She is also a member of the MA Executive Office of Health and Human Services Quality Measure Alignment Task Force. Ms. Rabson has a long track record for innovative collaboration. She received her Masters in Public Health from Yale University and her undergraduate degree from Brandeis University.

Patricia H. Folcarelli

Patricia H. Folcarelli is the Vice President for Health Care Quality at Beth Israel Deaconess Medical Center. In this role, she is responsible for the oversight of Patient Safety, Risk Management, Patient Relations, Performance Assessment and Regulatory Compliance, Credentialing and Medical Staff Affairs, Ethics Services, Infection Control and Hospital Epidemiology and Emergency Management. Pat received her BS in Nursing from Hunter College of the City University of New York, and an M.A. and Ph.D. from New York University. Pat serves on the board of the Massachusetts Coalition for the Prevention of Medical Errors, the Massachusetts Society for Healthcare Risk Management and on the Quality and Safety board for Mercy, a health system in St. Louis. Pat is the board chair for Medically Induced Trauma Support Services (MITSS). Pat and her team coordinate the Communication, Apology and Resolution (CARe) process at BIDMC. Pat is currently also involved in research activity focuses on using OpenNotes to improve patient safety; to reduce risk for harm in ICU patients; as well as work to eliminate the emotional harm from disrespect in healthcare.

Grace Cordovano

As the culmination of her life’s experiential learning and education, Dr. Grace Cordovano founded Enlightening Results in 2010. With over 18 years of experience as a cancer advocate and care partner, she is dedicated to fostering personalized patient advocacy services, specializing in the cancer arena. Dr. Cordovano strategically guides patients through survivorship or end-of-life care planning with empathy and compassion. She ensures they are armed with the most pertinent, medically credible, easy to understand information so as to make informed decisions about their care. Working directly with patients and their care partners provides a breath of understanding of the frustrations, barriers, fears, and limitations individuals encounter across many disease states. These unique insights drive Dr. Cordovano’s passion for continuously improving the patient experience. She works as a catalyst to include patient and care partner stories and experiences throughout the entire healthcare ecosystem. Dr. Cordovano is a proud member of the Alliance of Professional Health Advocates (APHA), Health 2.0 NYC, and the Society for Participatory Medicine. Dr. Grace Cordovano received her doctorate and Master’s degree in Biochemistry from Albert Einstein College of Medicine (Bronx, NY).

Susan Woods

Susan is a general internist and informaticist, focusing on health technology that drives participatory medicine, self-care and virtual care. She is former Director of Patient Experience at the VA’s Connected Care Office, developing web and mobile apps and leading national implementation of secure messaging, OpenNotes and Patient Generated Data. Currently she is a mentor at Maine’s accelerator Venture Hall, and Founder and CEO of HiTechHiTouch, LLC, and works on empowering patients to follow their care plans using intelligent messaging. As Associate Professor of Medicine and Medical Informatics, her research encompasses digital inclusion and design of consumer health technology, and use of patient portal services.

Catherine Rose, PhD/MBA

Catherine is mom to Alexis (11) and Jessica (10), both who have various medical issues. Inspired by Alexis’ hearing and vision impairments, Catherine developed an innovative lighting product called LightAide. She was recognized as a Rising Star by Boston Children’s Hospital and was awarded Edison Awards for LightAide and HealWell, a patient room lighting system to support sleep cycles. Catherine works to support others in their medical journeys. Learning her children, Catherine is an advocate for change and envisions the possible from the impossible. Currently in Skanska’s Innovative Construction Solutions team, Catherine leads process improvement initiatives.

Nancy Michaels

In 2005 Nancy had it all. She was a published author of several books and had a roster of Fortune 500 companies as clients. Nancy’s business was the first recipient of the Tom Peters Wow! Project Personified Award. Nancy Michaels’ life was on the fast track. She was literally the picture of success; a sought-after business speaker and mentor; the president and CEO of her own company and the mother of three small children.

In what seemed like an instant, Nancy found herself in a health crisis that would twice nearly end her life. In that year, Nancy underwent an emergency liver transplant and cranial procedure which brought with them significant medical complications that left her in a two-month coma in the intensive care unit at a major Boston medical facility.

Miraculously, her extensive rehab left her with no residuals; but, Nancy’s life – and the message she wanted to bring to her audiences – were irrevocably Changed. Now Nancy provides her inspirational speeches including “Lessons Learned from Dying” to audiences inside – and outside the U.S. Nancy also offers strategies, tactics and tools to increase patient satisfaction, engagement and safety to medical and healthcare audiences derived from her own experience as a longterm patient.

 

Patients / Caregivers

Darcy Daniels

Darcy Daniels is the mother of two daughters, one of whom is chronically ill. She is the co-chair of the Family Advisory Council at Massachusetts General Hospital for Children and contributes to STAT news, The Mighty, Bundoo, and her own blog, Brave Fragile Warriors.

Nancy Michaels

In 2005 Nancy had it all. She was a published author of several books and had a roster of Fortune 500 companies as clients. Nancy’s business was the first recipient of the Tom Peters Wow! Project Personified Award.
Nancy Michaels’ life was on the fast track. She was literally the picture of success; a sought-after business speaker and mentor; the president and CEO of her own company and the mother of three small children.
In what seemed like an instant, Nancy found herself in a health crisis that would twice nearly end her life. In that year, Nancy underwent an emergency liver transplant and cranial procedure which brought with them significant medical complications that left her in a two-month coma in the intensive care unit at a major Boston medical facility.

Miraculously, her extensive rehab left her with no residuals; but, Nancy’s life – and the message she wanted to bring to her audiences – were irrevocably changed.

Now Nancy provides her inspirational speeches including “Lessons Learned from Dying” to audiences inside – and outside the U.S. Nancy also offers strategies, tactics and tools to increase patient satisfaction, engagement and safety to medical and healthcare audiences derived from her own experience as a long-term patient.

Catherine Rose

Catherine is mom to Alexis (11) and Jessica (10), both who have various medical issues. Inspired by Alexis’ hearing and vision impairments, Catherine developed an innovative lighting product called LightAide. She was recognized as a Rising Star by Boston Children’s Hospital and was awarded Edison Awards for LightAide and HealWell, a patient room lighting system to support sleep cycles. Catherine works to support others in their medical journeys. Learning her children, Catherine is an advocate for change and envisions the possible from the impossible. Currently in Skanska’s Innovative Construction Solutions team, Catherine leads process improvement initiatives.

Gene R. Sacco

Co-founder, Reid R. Sacco Adolescent & Young Adult Cancer Alliance

Gene R. Sacco worked for more than 25 years as an Operations Management and Project Management professional in the biopharmaceutical industry. Most of his work involved creating, managing and improving business processes for the development, commercialization, and international cold-chain distribution of biopharmaceuticals designed to treat rare diseases, autoimmune disorders, cancer, and the side-effects of cancer treatment. In 2005, following a futile and frustrating two-year battle to save their 20-year-old son Reid’s life from a cancer that predominantly strikes adolescents and young adults, Gene and his wife, Lorraine, founded the Reid R. Sacco AYA Cancer Alliance. The mission of the Alliance is to be the leading force in a movement to “alter the course of AYA cancer”, and to make those cancers in this age group routinely curable. That mission has focused the activity of the Alliance on filling the many gaps this age group faces in cancer treatment, care, and awareness. Under his and his wife’s leadership, the Alliance has succeeded in opening two AYA Cancer Programs/Clinics in New England. These Programs/Clinics have set new standards for the development of clinical trials in these cancers, and for models-of-care for AYA cancer patients survivors of childhood cancers, many of whom are experiencing life-threatening late side-effects of their earlier cancer treatments.

Lorraine Sacco

Co-founder, Reid R. Sacco Adolescent & Young Adult (AYA) Cancer Alliance

Lorraine Sacco has been a Medical Technologies for more than 35 years at Massachusetts General Hospital. Her work spans advanced diagnostics and clinical testing ranging from blood-gas analysis, to testing for indicators of growth or remission of malignancies. In addition to her role as co-founder of the Reid R Sacco AYA Cancer Alliance, she is Director the Annual Reid’s Ride Bike Ride to fight AYA Cancers. Over its 13 years, Reid’s Ride has raised more than $2.5 million improve the treatment, care and survival rates of children, adolescents and young adults diagnosed with cancer. Lorraine also leads the way in recruiting and managing an army of more than 200 Alliance volunteers, and leads all efforts to recruit corporate sponsors, procure charitable donations, and promote the Alliance’s work and events. Lorraine is also Lead Contact with the Medical Directors of the two AYA Cancer Programs launched by the Alliance, helping chart the courses, budgets and priorities of these Programs (one at Tufts Medical Center and one at Connecticut Children’s Medical Center). Lorraine and her husband, Gene, are the proud parents of Reid’s younger brother, Weston D. Sacco, MD. Weston actively promotes awareness among his colleagues about AYA cancer, particularly the importance of early detection during differential diagnosis.

Lily Stairs

Lilly is a dynamic and driven professional passionate about making a positive impact on the lives of others. She has served in the advocacy field for 10 years, starting in the anti-bullying sphere and transitioning into patient advocacy after she was diagnosed with multiple autoimmune diseases. Lilly currently serves as the Head of Patient Advocacy at Clara Health where she is responsible for conceiving and executing patient engagement strategy and ensuring the patient voice remains firmly at the center of the company.

During her tenure at MassBio, a premiere life sciences trade association with 700+ industry members, Lilly created and executed the #PatientDriven campaign – a successful initiative that united patients and professionals and is now a staple of the MassBio brand.

Lilly has not only dedicated her professional life to advocacy, but her personal life as well. She currently serves as a Board Member for the American Autoimmune Related Diseases Association (AARDA) where she provides strategic direction on current and future initiatives of the organization. She also works closely with notable healthcare and biotech companies to help ensure their initiatives remain patient-centric.

 

 

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